Reality Bites

Talking with a friend the other day, she pointed out that I have never really written about the finer details of Nico, his prognosis and the reality of our day to day life... now and in the future. There have been allusions to things here and there, pointing to a few struggles but nothing concrete. I am not sure why.

So here we go. The Reality.

When Nico was born, at 24 weeks and zero days, 710 grams, he had or he developed a brain haemorrhage due to his prematurity. It was classified as Grade 2 but it resorbed and we thought that would be the end of it. Little did we know that this would leave a scar and 9 months later the first whispers of cerebral palsy would come about. As it can not be tested and is just something diagnosed by watching development, we never got a sit down diagnosis. It just evolved like Chinese whispers, I mention that the neurologist had said possible cerebral palsy and slowly the "possible" just dropped out of everyone elses conversation. Except mine and my husbands. We took a little longer to lose that.




6 weeks old


What does this mean for us right now?

Nico has very little control of his muscles. He has enough muscle tone to hold up his head and body but he can not control it so will either be too relaxed (floppy) or hyper extended and completely rigid, with his head and arms all the way back, like superman. He next to  never faces the middle, he will always chose to hold his head to one side, but the side changes. It makes him really hard to hold and carry around as you really need to hold him with two hands. Even if he is relaxed, you never know when he is going to fling himself into rigid mode. You have to forcibly break the lock of his legs or hips to get him to relax again. Getting him dressed is like trying to get one of those plastic dolls dressed.. but one that fights with you. His legs kick and his arms lock.

He doesn't play with things and he doesn't have the instincts to put his hand in his mouth. It must frustrate the hell out of him as I am sure he would love to play. We have a loan toy from his Early Intervention group which is called a switch toy. It is a regular baby toy (in our case a spinning type one) but it has been converted so that it has s giant button that is very easy to push. At  around $400 dollars per toy, I can't envisage us ever owning one, let alone more.   Heartbreaking thought, a child with no (useable) toys... and he really does seem to understand what to do and will concentrate really hard at times. So precious. Hopefully we can borrow one more often, but of course they are in short supply and needed for therapy sessions




Playing.. with encouragement from Big Sis.
Tee read "My dads car is faster than yours" hehehe.




Feeding is up and down. He is offered a bottle at every feed. He often refuses completely, other times he can drink upwards of 100ml. We just put any remaining feed through his PEG pump. If he doesn't really drink anything orally, the PEG will take about an hour to give him the 240ml. the plus side is, he can feed in the car while I drive, I can go and do dishes while he feeds and if he is too tired, I can just feed him while he sleeps. As I write this, I realise how crazy it is that this is just normal to us. Normal that there is a lilo valve in my little mans tummy that we just open and close to make sure he gets food enough to sustain him. Normal that if I go out for more than 4 hours with the kids (which almost never happens) I have to pack a little machine the size of a desk radio, a pole, a special bottle and hanger, a tube for the pump and a connector tube to attach it to his tum.  In a good mood, Nico DOES eat soft mushy food really well. I love to give him rusks and toast etc but since he doesn't hold it for himself, it is a chore.

In a week, I would say 3 days are bad days. Days where Nico cries more than half the time and regardless of what you do, you can't make him happy. He will be a bit quieter when being held but still voicing displeasure over something. Frustration perhaps. He is not stupid, he is not brain damaged, he doesn't have an intellectual disablitly He can think like any other baby of his corrected age. Can you imagine that kind of frustration? That kind of wanting? That kind of restriction? Knowing what you want and need but having no way of geting it or telling anyone, I would scream too.

Nights swing in favour of the bad. A good night is 3 wake ups.. or by some kind of miracle, less than that. A bad one could involve not more than 1 hour straight sleep at a time and an average of 1.5 hours with a few 2 hours for good measure. It is torturous, there is no other word. With a 3 year old munchkin to look after by day, there is little time for catching up rest. I walk around like a zombie half the time, broken conversations, a scatterbrain memory and no motivation to do anything. I would love to get to the bottom of it but the only answer we seem to get is "He will grow out of it"  which just makes me want to reply "Well, what if he doesn't just grow out of it" in a really nasal snarky mimicky patronising tone. The last week or two has been a good/bad/good/bad night pattern which has left me feeling a little better but somehow also makes the bad nights worse. It's like because I know he can do it, it grates on me more that he is not. I have been prescribed a sedative for him but i am reluctant to use it due to the side effects and addictive nature. He is barely one year old corrrected, a sleeping pill???

What does the future hold?

We will not know what he will be able to do until he does it. All we know is everything he does, will be a massive effort for him. Initially the speech therapist had said "We'll most likely be looking at alternative forms of communitcation" and knocked me to the floor. I had never even contemplated speech issues before. I was too focused on the physical. Last week she said, in a positive tone that we may get words from him yet. I wanted to cry. not because I was overcome with emotion exactly, but coz I realised how unfair it was for that statement "We may get words from him" to be such a big deal. How ripped off I feel, I can not even explain. Being robbed of pregnancy at 5 months was bad enough. Now I may be robbed of hearing my little mans voice too.

He won't be walking for a long while, if at all. Saying he will be in a wheelchair doesn't seem right for a child who doesn't look out of place in a pram... but I guess he kind of is/ will be. He still has a stepping reflex and he seems to bear weight well on his feet so I hold hope. He may be in a walker, depending how the head and trunk control goes. I saw a great tee shirt on line the other day, "Walkers: Not just for Old People" I doubt much will stop me getting him one of those, it is genius.

He is extremely unlikely to be involved in mainstream shool and if we remain in the area we are now, his school will be the Nepean School, 45 minutes away. Thankfully there is a bus but I can't even picture a tiny 5 year old, most likely in a wheelchair, being carted off to shool on a bus, even if it is a private one. The school sounds amazing and on top of CWSN teachers, incorperates team of physio and occupational therapists.

So that is the bad side of the truth. The harsher realities of my day and what I get to contemplate 24/7.  As I have said previously, overall though, I am NOT miserable. My children are the best things in the world and as much as I would change Nico in a million ways if I could, I love him as much as any mother loves their child, regardless. His smile really does make you forget he is anything but a perfect little creature.

Sticks and stones

Warning. Uncensored post. Not designed for warm fuzzies. Just letting my fingers type and see what comes out 

Words hurt. Words can eat you from the inside out. This past 2 years certainly proved that to me.

GP: "An MPT. Medical pregnancy termination" (in response to my asking what I had just sat the ED for 8 hours waiting for, only to be sent back to my GP to tell him he was meant to make a booking)

Genetics specialist "Your baby is not compatible with life outside the womb" (not Nico, middle bub)

Sonographer "Your cervix is short and dilated which tells us you are likely having this baby sooner rather than later" (at 20 weeks pregnant)

Obstectrician "Probably better to go into labour in the mext 2 weeks, then it can be called a miscarriage"

Obstetrician "I would prefer it if your husband were here when I tell you this, but your waters have certainly broken and you are quite dilated" (the day I turned 23 weeks)

NICU nurse "We had to resuscitate him"

NICU nurse "Take him and get the mother out of here, quick."

I am getting pretty sick of these words, nesting in my head ... lurking in the back, seldom used corners. Like a spider you glance at now and then, expecting it to just go away if you leave it long enough... and to your surprise is still there, everysingle time, looking like it hasn't even moved.

We have our precious little miracle man and although he comes with a new set of words I would rather not hear, we have him. So now I just have to get rid of those cobwebs that are cluttering my brain and focus on the blessing that is my children, husband ... family and friends.

The Weakness and the Strength

Nico is in hospital... again... but this time a planned stay. You'd think that would be better; it's not. He is back to his worst and there is not a damn thing anyone can do about it it seems. So why am I on the laptop writing this post or this on to Brooklyn instead of soothing him? Same reason anyone visits a psychologist. Therapy.

His PEG is in, the procedure (which is not classed as surgery) went well but it seems that Nico's immune system must be weak because all signs point to infection. Screaming pretty much constantly, not sleeping more than 30 minutes, temperature of 38-39.7 for over 24 hours despite panadol... and several other pain relievers. He is flailing around, back on oxygen as a precaution, on IV antibiotics. Nurses see traits of seizures in his behaviour but the neurologist hasn't been in yet. He has been told all that Nico does in the past and is confident they are not seizures but I want him to see for himself and then tell me. If they are, from what I can see he only does this when there is something wrong, like infection... which may explain why 2 x EEGs have come back clear. Or maybe it is just his body's reaction to pain/ infection/ frustration and is not seizures at all

I can't put into words what I am feeling. But I will try.

Drained.
Done.
Heartbroken.
Ready to Run.
Helpless.
Pretty Effing angry at the world.

I just look at his gorgeous face and the last 16 months goes through my head and it is all so wrong. Half his life in hospital. 4 operations if you include this, 6 times under general anaesthetic, 6 further hospital admissions. How can this be right???

For a boy so weak, I haven't met one stronger. I know there are kids and parents in worse situations and am grateful it's not any worse, but he is my hero.

PS If you are wondering what a PEG is, it looks like this but don't look if you don't like medical stuff. Nico's doesn't have all the tape on and actualy looks a lot better but it gives you an idea.

The Weakness and the Strength

Nico is in hospital... again... but this time a planned stay. You'd think that would be better; it's not. He is back to his worst and there is not a damn thing anyone can do about it it seems. So why am I on the laptop writing this post or this on to Brooklyn instead of soothing him? Same reason anyone visits a psychologist. Therapy.

His PEG is in, the procedure (which is not classed as surgery) went well but it seems that Nico's immune system must be weak because all signs point to infection. Screaming pretty much constantly, not sleeping more than 30 minutes, temperature of 38-39.7 for over 24 hours despite panadol... and several other pain relievers. He is flailing around, back on oxygen as a precaution, on IV antibiotics. Nurses see traits of seizures in his behaviour but the neurologist hasn't been in yet. He has been told all that Nico does in the past and is confident they are not seizures but I want him to see for himself and then tell me. If they are, from what I can see he only does this when there is something wrong, like infection... which may explain why 2 x EEGs have come back clear. Or maybe it is just his body's reaction to pain/ infection/ frustration and is not seizures at all

I can't put into words what I am feeling. But I will try.

Drained.
Done.
Heartbroken.
Ready to Run.
Helpless.
Pretty Effing angry at the world.

I just look at his gorgeous face and the last 16 months goes through my head and it is all so wrong. Half his life in hospital. 4 operations if you include this, 6 times under general anaesthetic, 6 further hospital admissions. How can this be right???

For a boy so weak, I haven't met one stronger. I know there are kids and parents in worse situations and am grateful it's not any worse, but he is my hero.

PS If you are wondering what a PEG is, it looks like this but don't look if you don't like medical stuff. Nico's doesn't have all the tape on and actualy looks a lot better but it gives you an idea.

Can someone please lend me a crystal ball?

Nico has been home for over 7 months now.
I'd love to confirm that the roller-coaster ends when you leave the NICU/SCN bubble but unfortunately, for us this was not the case. . You know hen the roller coaster has done one lap, the guy asks "Anyone want to get off before the next lap?" He ignored our shouts of "Let us off, we've had enough!"
We have been in and out of hospital about 6 times in as many months for Nico's chronic irritability. The first 3 months or so he slept great at night and only woke for feeds. In the last 4 months tho I can count the times I (and he) have had more than 2 straight hours sleep on one hand. He got to a point of screaming, not crying, screaming, 9 hours a day. At worst it has been 18 hours, only pausing to cat nap for 30 minutes at a time. In a word: unmanageable. He goes completely rigid whenever he screams and it is almost impossible not to read "pain". So we take him to the hospital for answers:
First: Bronchiolitis.
Next: No answer. "Must just be behavioural but he is failing to thrive (500g weight gain in 3 months) so we will look into that" and his nasal gastric tube was put in after 3 months without it. He started to put on weight and was sent home, irritability forgotten
Then: "Brain irritability, it happens with premmies, he will grow out of it"
etc etc.
It has been so frustrating and saddening to see your little fighter, someone who has already worked so hard to stay in the world, struggling with something he can't communicate to you.
We have been seeing various specialists, respiratory, gastro-enterology and scariest of all specialist areas: neurology.
A few months in, during one of our first return visits to the hospital, the neurologist came by in case it was seizures. Luckily he happened to see one of these rigid screaming episodes and categorically said it was NOT seizures. I was happy and not surprised. He asked me as a mother, what my instincts said. Unrelated to the screaming, I told him was worried about cerebral palsy purely because I had just met 3 premmies with CP and knew that up to 25% of micro premmies developed this. I wasn't really prepared for his response of "Well, with the history, all we can do is put it together like a story, and in this case, knowing he had a brain haemorrhage, seeing some things like how his hands are so clenched and he doesn't really make controlled movements, the pieces fit. There is no test we can do, it will just be a wait-and-see how his development goes over the next year."
What do you do with that? Prepare for the worst, hope for the best. The prepare for the worst part, I can do. Research research research. What do I get? Nothing.
He is 14 months old as I write. 10 months corrected. He smiles and gurgles. He has the best laugh in the world. It's a real chuckle and the moment it starts, the 2 hours of screaming that may have just left you in tears yourself, is instantly forgotten. It makes everything right again.
Apart from that, he hasnt met any milestones. The only planned movement he makes is swatting the bottle away when he is being fed. There is no reaching, rolling or putting things to his mouth He has just gotten a tooth but since he doesn't have the know-how to hold something and put it to his mouth, teethers are pointless. I remember telling the social worker in the early NICU days, maybe due to the brain haemorrhage or when he got resussed, i cant remember, that I couldn't picture how we would cope with a toddler and a major disability if it Nico's prematurity were to cause him problems. Her answer was "But you would just evolve with him" and I didnt really know what she meant. I do now. Cerebral Palsy is now treated as a given. There was not a specific time when the tentative "yes it is a possibility" changed to "Yes, it is confirmed" , it just.. evolved.
Cerebral palsy doesn't really have a definition. The term cerebral palsy is completely useless to a parent wanting to know what life holds for their child. Cerebral palsy, as a term, SUX.
All i got from god only knows how many hours of reading was that he may not be able control his hand very well so writing may be messy - OR - he may never be able to walk, speak, use his arms or hands or any motor skills like that. How's that for a sliding scale of what the future might be.

Can someone please lend me a crystal ball?

Nico has been home for over 7 months now.
I'd love to confirm that the roller-coaster ends when you leave the NICU/SCN bubble but unfortunately, for us this was not the case. . You know hen the roller coaster has done one lap, the guy asks "Anyone want to get off before the next lap?" He ignored our shouts of "Let us off, we've had enough!"
We have been in and out of hospital about 6 times in as many months for Nico's chronic irritability. The first 3 months or so he slept great at night and only woke for feeds. In the last 4 months tho I can count the times I (and he) have had more than 2 straight hours sleep on one hand. He got to a point of screaming, not crying, screaming, 9 hours a day. At worst it has been 18 hours, only pausing to cat nap for 30 minutes at a time. In a word: unmanageable. He goes completely rigid whenever he screams and it is almost impossible not to read "pain". So we take him to the hospital for answers:
First: Bronchiolitis.
Next: No answer. "Must just be behavioural but he is failing to thrive (500g weight gain in 3 months) so we will look into that" and his nasal gastric tube was put in after 3 months without it. He started to put on weight and was sent home, irritability forgotten
Then: "Brain irritability, it happens with premmies, he will grow out of it"
etc etc.
It has been so frustrating and saddening to see your little fighter, someone who has already worked so hard to stay in the world, struggling with something he can't communicate to you.
We have been seeing various specialists, respiratory, gastro-enterology and scariest of all specialist areas: neurology.
A few months in, during one of our first return visits to the hospital, the neurologist came by in case it was seizures. Luckily he happened to see one of these rigid screaming episodes and categorically said it was NOT seizures. I was happy and not surprised. He asked me as a mother, what my instincts said. Unrelated to the screaming, I told him was worried about cerebral palsy purely because I had just met 3 premmies with CP and knew that up to 25% of micro premmies developed this. I wasn't really prepared for his response of "Well, with the history, all we can do is put it together like a story, and in this case, knowing he had a brain haemorrhage, seeing some things like how his hands are so clenched and he doesn't really make controlled movements, the pieces fit. There is no test we can do, it will just be a wait-and-see how his development goes over the next year."
What do you do with that? Prepare for the worst, hope for the best. The prepare for the worst part, I can do. Research research research. What do I get? Nothing.
He is 14 months old as I write. 10 months corrected. He smiles and gurgles. He has the best laugh in the world. It's a real chuckle and the moment it starts, the 2 hours of screaming that may have just left you in tears yourself, is instantly forgotten. It makes everything right again.
Apart from that, he hasnt met any milestones. The only planned movement he makes is swatting the bottle away when he is being fed. There is no reaching, rolling or putting things to his mouth He has just gotten a tooth but since he doesn't have the know-how to hold something and put it to his mouth, teethers are pointless. I remember telling the social worker in the early NICU days, maybe due to the brain haemorrhage or when he got resussed, i cant remember, that I couldn't picture how we would cope with a toddler and a major disability if it Nico's prematurity were to cause him problems. Her answer was "But you would just evolve with him" and I didnt really know what she meant. I do now. Cerebral Palsy is now treated as a given. There was not a specific time when the tentative "yes it is a possibility" changed to "Yes, it is confirmed" , it just.. evolved.
Cerebral palsy doesn't really have a definition. The term cerebral palsy is completely useless to a parent wanting to know what life holds for their child. Cerebral palsy, as a term, SUX.
All i got from god only knows how many hours of reading was that he may not be able control his hand very well so writing may be messy - OR - he may never be able to walk, speak, use his arms or hands or any motor skills like that. How's that for a sliding scale of what the future might be.

The beginning of the end of the beginning

I forgot to chronicle for a while. I was sidetracked by my parents arrival. With Nico's homecoming in mind, a few months ago a fab friend of mine offered to help me make curtains for his room as I was having trouble finding what I wanted in ready-mades. When I say 'help me', I would like to clarify that I know nothing about sewing I tried for 2 semesters over two years at the start of high school when it was mandatory. The only thing I remembered was making an N shape when threading the machine if done correctly. And then, I think found that actually the N shape means it is wrong.. as in if you see an N it means NO. I don't remember. Anyway. We started making the curtains 3 weeks ago on Tuesdays while our kids were in daycare. The 2nd Tuesday (week 23 of NIco's life), while making curtains, phone rings and I assume it is my husband calling after his visit to the hospital. I was right. Usually this conversation goes "Just finished at the hospital, he is good. I'll be home about 5" Not that day... "Well, the nurse asked the doctors those questions you asked her and got some answers" "Riiiiiiiight...?" "They think Nico will be on high flow next week. A week or two later he will move to our hospital. 2 or 3 weeks after that he should be home after a night back at the tertiary hospital for his hernia operation" I could have danced around the house for hours but I think I just looked at Friend, told her and we both had tears in our eyes. Then I called my mum. (They were due to arrive in a week and I wasn't sure if this news would delay that) It was surreal. Finally we were close enough, clear enough, big enough, well enough to be given some form of timeline. Whether Nico cooperated or not didn't matter, I knew it was just indicators, but that was enough. Not once in the almost 6 months at the hospital would anyone give us any idea of when we might expect anything to happen. Two days later he tried low flow for the first time. I wasn't told about it in advance, the doctors did their rounds, one of the more senior doctors said "I will just talk to the Fellow and see what he thinks" and 10 minutes later another doctor came back and said he was to go on the low flow for up to 8 hours or for as long as he tolerated. He had a nurse from Adult ICU, Heidi, who I took an immediate dislike to. It's really annoying having someone HOVER around you when your breastfeeding, giving you unsolicited advice you don't need. I'd been feeding him for 2 months and only stopped feeding my daughter 4 or 5 months before he was born, I think I might know a thing or two about it. She was on lunch when the doc came back so I had to wait for her return before he could change over. I told her and she got another nurse to show her what to do. He didn't cope well, his oxygen saturation yo-yo'd between 75 and 86% for about 20 minutes. The other nurses told Heidi he was not tolerating it and she just said "Ok... so when do I know that I should take him off." so they spelt it out " The doctors said to take him off if he is not tolerating. He is not tolerating" Heidi "RIght. But how long long do I give him desaturating. His respiratory rate hasn't changed". One nurse was obviously as fed up as I was with her and snapped " He's desating, he's not tolerating it, you don't wait". I looked at the meter and saw that it was not even set to the level the doctors requested but it was too late to ask them to try with it set correctly. He had been low for long enough. From an outsiders' perspective, this might sound weird, like why did I not tell them to sort him out earlier but 75% is not bad per se, cardiac babies are allowed/ expected sit in high 60's permanently if that is right for them, so it was not that he was in danger or struggling, he just wasn't in the parameters they wanted. So he had a few days rest and on Monday they tried again on Low Flow. He did fine. He never went back to High Flow. I still suspect that on the Thurday the meter was not correct all along... I am possibly just being a cynic.

The beginning of the end of the beginning

I forgot to chronicle for a while. I was sidetracked by my parents arrival. With Nico's homecoming in mind, a few months ago a fab friend of mine offered to help me make curtains for his room as I was having trouble finding what I wanted in ready-mades. When I say 'help me', I would like to clarify that I know nothing about sewing I tried for 2 semesters over two years at the start of high school when it was mandatory. The only thing I remembered was making an N shape when threading the machine if done correctly. And then, I think found that actually the N shape means it is wrong.. as in if you see an N it means NO. I don't remember. Anyway. We started making the curtains 3 weeks ago on Tuesdays while our kids were in daycare. The 2nd Tuesday (week 23 of NIco's life), while making curtains, phone rings and I assume it is my husband calling after his visit to the hospital. I was right. Usually this conversation goes "Just finished at the hospital, he is good. I'll be home about 5" Not that day... "Well, the nurse asked the doctors those questions you asked her and got some answers" "Riiiiiiiight...?" "They think Nico will be on high flow next week. A week or two later he will move to our hospital. 2 or 3 weeks after that he should be home after a night back at the tertiary hospital for his hernia operation" I could have danced around the house for hours but I think I just looked at Friend, told her and we both had tears in our eyes. Then I called my mum. (They were due to arrive in a week and I wasn't sure if this news would delay that) It was surreal. Finally we were close enough, clear enough, big enough, well enough to be given some form of timeline. Whether Nico cooperated or not didn't matter, I knew it was just indicators, but that was enough. Not once in the almost 6 months at the hospital would anyone give us any idea of when we might expect anything to happen. Two days later he tried low flow for the first time. I wasn't told about it in advance, the doctors did their rounds, one of the more senior doctors said "I will just talk to the Fellow and see what he thinks" and 10 minutes later another doctor came back and said he was to go on the low flow for up to 8 hours or for as long as he tolerated. He had a nurse from Adult ICU, Heidi, who I took an immediate dislike to. It's really annoying having someone HOVER around you when your breastfeeding, giving you unsolicited advice you don't need. I'd been feeding him for 2 months and only stopped feeding my daughter 4 or 5 months before he was born, I think I might know a thing or two about it. She was on lunch when the doc came back so I had to wait for her return before he could change over. I told her and she got another nurse to show her what to do. He didn't cope well, his oxygen saturation yo-yo'd between 75 and 86% for about 20 minutes. The other nurses told Heidi he was not tolerating it and she just said "Ok... so when do I know that I should take him off." so they spelt it out " The doctors said to take him off if he is not tolerating. He is not tolerating" Heidi "RIght. But how long long do I give him desaturating. His respiratory rate hasn't changed". One nurse was obviously as fed up as I was with her and snapped " He's desating, he's not tolerating it, you don't wait". I looked at the meter and saw that it was not even set to the level the doctors requested but it was too late to ask them to try with it set correctly. He had been low for long enough. From an outsiders' perspective, this might sound weird, like why did I not tell them to sort him out earlier but 75% is not bad per se, cardiac babies are allowed/ expected sit in high 60's permanently if that is right for them, so it was not that he was in danger or struggling, he just wasn't in the parameters they wanted. So he had a few days rest and on Monday they tried again on Low Flow. He did fine. He never went back to High Flow. I still suspect that on the Thurday the meter was not correct all along... I am possibly just being a cynic.

Quality time with my special girl

Now that life is a bit of a logistical nightmare, I am understanding the meaning of "Quality Time". It's not that I didn't believe in it or understand it... I just thought it was for the dad's who didn't get home from work til their child's bed time.

Now I am the Invsible Mum. My time with Brooklyn has been cut down to maybe 1/4 of what it was. Not by 1/4. To 1/4. I wrote out a mini schedule with 2 times slots per day: AM and PM and 3 activities "Work" "Nico" and "Brooklyn" for the nurses so they knew when to expect me. Work got 3 slots, Brooklyn got 3.5 (in just 3 days), Nico got 5.5 and Saturday was left blank. Seeing this on paper, although completely skewed as of course I spend time with her each day, made me incredible sad. I wanted to cry. My little girl, my amazing little girl, was going through one of the funniest ages in her lifetime, and I was missing chunks of it.

Through this little exercise, I found Thursday's has become Brooklyn's day. It is the only day I have to devote the whole day to her. Even then I miss the start of it. I go to the hospital at 6am, feed Nico at 8 and get home by 9.30am. On Wednesday night I had our day all planned to makes sure that the time we did get was all about her.. not me or the house (although we did do a few groceries but the trip was to get her some fairy wings)

We started off the day outside where she had been helping her dad move some stones. We filled buckets, ran along the side of the house and searched for snails... something either her Nana or cousin taught her...

With fairies being her latest obsession, I was ordered inside to watch The Fairies which I had recorded for her the day before. We did the Boogie Woogie Sand Dance (sha-a-ake your bo-ot-tom), helped Harmony and Rhapsody write a letter and scoffed at the flying boat.

Just in time for lunch we cooked some muffins. She shook in the ingredients, mixed it up and most importantly, licked the spoon and bowl!!! She stood on a backwards chair in front of the oven and watched in amazement as they grew and grew... it was almost, but not quite as exciting as getting to eat them. She was even allowed to have "juice" with her lunch, just like her mum. (A splash of juice in a cup of water)

After a nap we went to the shops and bought some fairy wings and playdough equipment. This resulted in a little fairy sitting at Brooklyn's table playing with playdough for the afternoon. Only after another trip to the beach in the flying boat with Harmony and Rhapsody though. With her wings and wand, obviously. It wan't until we put this on that she pointed out that she didn't have the "eyes" like the other fairies. Oh well. Thursday will come again next week!

Quality time with my special girl

Now that life is a bit of a logistical nightmare, I am understanding the meaning of "Quality Time". It's not that I didn't believe in it or understand it... I just thought it was for the dad's who didn't get home from work til their child's bed time.

Now I am the Invsible Mum. My time with Brooklyn has been cut down to maybe 1/4 of what it was. Not by 1/4. To 1/4. I wrote out a mini schedule with 2 times slots per day: AM and PM and 3 activities "Work" "Nico" and "Brooklyn" for the nurses so they knew when to expect me. Work got 3 slots, Brooklyn got 3.5 (in just 3 days), Nico got 5.5 and Saturday was left blank. Seeing this on paper, although completely skewed as of course I spend time with her each day, made me incredible sad. I wanted to cry. My little girl, my amazing little girl, was going through one of the funniest ages in her lifetime, and I was missing chunks of it.

Through this little exercise, I found Thursday's has become Brooklyn's day. It is the only day I have to devote the whole day to her. Even then I miss the start of it. I go to the hospital at 6am, feed Nico at 8 and get home by 9.30am. On Wednesday night I had our day all planned to makes sure that the time we did get was all about her.. not me or the house (although we did do a few groceries but the trip was to get her some fairy wings)

We started off the day outside where she had been helping her dad move some stones. We filled buckets, ran along the side of the house and searched for snails... something either her Nana or cousin taught her...

With fairies being her latest obsession, I was ordered inside to watch The Fairies which I had recorded for her the day before. We did the Boogie Woogie Sand Dance (sha-a-ake your bo-ot-tom), helped Harmony and Rhapsody write a letter and scoffed at the flying boat.

Just in time for lunch we cooked some muffins. She shook in the ingredients, mixed it up and most importantly, licked the spoon and bowl!!! She stood on a backwards chair in front of the oven and watched in amazement as they grew and grew... it was almost, but not quite as exciting as getting to eat them. She was even allowed to have "juice" with her lunch, just like her mum. (A splash of juice in a cup of water)

After a nap we went to the shops and bought some fairy wings and playdough equipment. This resulted in a little fairy sitting at Brooklyn's table playing with playdough for the afternoon. Only after another trip to the beach in the flying boat with Harmony and Rhapsody though. With her wings and wand, obviously. It wan't until we put this on that she pointed out that she didn't have the "eyes" like the other fairies. Oh well. Thursday will come again next week!

Going with the flow

So this time last week, high flow had been written into the plan but had not started.... now it's in full swing. Monday morning was to be Nico's first attempt at this and I arrived at the hospital on the biggest high. Brimming over with excitement, I burst into the bay and told the nurse Me"Hooray, high flow today for 2 hours!!". Nurse "Um, no. It says you can when feeding if needed" Me "Yesterday at the round the doctors were talking about it and said 2 hours a day" Nurse "No, it has high flow for feeding if needed, it has said that for days" Me "I know that, but we haven't been doing it because it wasn't needed, he can feed on CPAP but the doctors want him on 2 hours a day now if tolerating" Nurse "No, that's not what is written here" I was nearly going to grab a pen and write it on the damn plan myself, I was furious. Thankfully the rounds entered Nico's bay just as we were about to feed and I knew they would back me up. It was not Nico's assigned doctor but I like him and he does know Nico from a while back. My heart sank a wee bit when he said "I don't see the need to change anything on a public holiday" (ummm holiday? This is medicine not a corporate office... there is no holiday!!) but thankfully he continued with "But i strongly recommend trying him on high flow while you feed and hold him today so we can see how he goes" Hurrah! So out comes the high flow machine, off come the giant CPAP prongs and hat/ headband and on goes the tiny (in comparison) cannula of high flow. He looked so good!! Even though he still had all the velcro tape on his cheeks to keep it all in place, you could see so much more of him. He had a good feed and a nice long cuddle and did so well.. I was overjoyed. It was another sign that he really would come home. The next day they increased his high flow time to 2 hours twice a day and upped him to 2-4 suck feeds . He has his feeds 3 hourly so that means up to half of his feeds don't need to be tubed now!. It seemed to make feeding so much easier, but maybe he was just getting the hang of it. I was a little concerned about the bottle feeding, as I think I mentioned in previous blogs, but I had to be pragmatic and there was no way I could be there for 4 feeds a day and I did not want to hinder his progress by limiting to 1 or 2 per day. We had established feeding pretty well so he would be getting 1 or 2 bottles a day. The day after his first bottle, he all but refused to feed. I was a bit anxious that he had already goten his preference to the bottle but this was quickly appeased the next day when we had a 45 minute text book feed I actually became really happy with this development when I got to watch Geoff give him a bottle. I felt like they don't really get much 'special' time together. I know every moment is special but I mean Geoff doing something with Nico other than nappy changes and baths. This was just for them together. I have my feeding, he has his bottles. Perfect. Another day or two went by and again they increased his high flow to 2 x 4 hours and the next day: 2 x 6 hours a day!!! Half his day! He has had a few of his little episodes but nothing too major. The worst being this morning and I had a little panic at hearing his oxygen requirement went from 26-28% up to 40% but when I go there an hour later, it was back down to 28%. I have a feeling that it was due to having a nurse who didn't know him and she just increased it every time he had a little desaturation. My time management skills are being tested (and failing) but we are managing... it really is geting harder and harder to leave though. He is just so alert when he's awake And yesterday... maybe, just maybe... he smiled.

Going with the flow

So this time last week, high flow had been written into the plan but had not started.... now it's in full swing. Monday morning was to be Nico's first attempt at this and I arrived at the hospital on the biggest high. Brimming over with excitement, I burst into the bay and told the nurse Me"Hooray, high flow today for 2 hours!!". Nurse "Um, no. It says you can when feeding if needed" Me "Yesterday at the round the doctors were talking about it and said 2 hours a day" Nurse "No, it has high flow for feeding if needed, it has said that for days" Me "I know that, but we haven't been doing it because it wasn't needed, he can feed on CPAP but the doctors want him on 2 hours a day now if tolerating" Nurse "No, that's not what is written here" I was nearly going to grab a pen and write it on the damn plan myself, I was furious. Thankfully the rounds entered Nico's bay just as we were about to feed and I knew they would back me up. It was not Nico's assigned doctor but I like him and he does know Nico from a while back. My heart sank a wee bit when he said "I don't see the need to change anything on a public holiday" (ummm holiday? This is medicine not a corporate office... there is no holiday!!) but thankfully he continued with "But i strongly recommend trying him on high flow while you feed and hold him today so we can see how he goes" Hurrah! So out comes the high flow machine, off come the giant CPAP prongs and hat/ headband and on goes the tiny (in comparison) cannula of high flow. He looked so good!! Even though he still had all the velcro tape on his cheeks to keep it all in place, you could see so much more of him. He had a good feed and a nice long cuddle and did so well.. I was overjoyed. It was another sign that he really would come home. The next day they increased his high flow time to 2 hours twice a day and upped him to 2-4 suck feeds . He has his feeds 3 hourly so that means up to half of his feeds don't need to be tubed now!. It seemed to make feeding so much easier, but maybe he was just getting the hang of it. I was a little concerned about the bottle feeding, as I think I mentioned in previous blogs, but I had to be pragmatic and there was no way I could be there for 4 feeds a day and I did not want to hinder his progress by limiting to 1 or 2 per day. We had established feeding pretty well so he would be getting 1 or 2 bottles a day. The day after his first bottle, he all but refused to feed. I was a bit anxious that he had already goten his preference to the bottle but this was quickly appeased the next day when we had a 45 minute text book feed I actually became really happy with this development when I got to watch Geoff give him a bottle. I felt like they don't really get much 'special' time together. I know every moment is special but I mean Geoff doing something with Nico other than nappy changes and baths. This was just for them together. I have my feeding, he has his bottles. Perfect. Another day or two went by and again they increased his high flow to 2 x 4 hours and the next day: 2 x 6 hours a day!!! Half his day! He has had a few of his little episodes but nothing too major. The worst being this morning and I had a little panic at hearing his oxygen requirement went from 26-28% up to 40% but when I go there an hour later, it was back down to 28%. I have a feeling that it was due to having a nurse who didn't know him and she just increased it every time he had a little desaturation. My time management skills are being tested (and failing) but we are managing... it really is geting harder and harder to leave though. He is just so alert when he's awake And yesterday... maybe, just maybe... he smiled.